Last reply 1 week ago
Thoughtline

It has been 5 years since the beginning of all this when I sat down with a neurologist and said ‘Well yes, I’ve had some numbness in my legs’ at the end of an appointment.

During the 5 years I’ve had: 1 diagnosis of CIS, numerous MRIs, 1 LP, 1 nerve conduction study, 1 stint of neuro rehab, a lot of blood drawn and a bunch of medication perscribed. I’ve also become a fulltime wheelchair user, moving from invisibly impaired to visibly impaired. We’ve eliminated essentially everything bar MS and HSP, with PD always being a weird, more and more implausible possiblity.

Quadriparesis at the very least. Fatigue, pain, vertigo – potentially some visual changes. TIAs, various ‘subcotical hyperintensities’ and ‘probable’ incomplete lesions at c3 and c6, positive O-bands, ‘complex neuro inflammatory syndrome’ but no firm diagnosis of MS.

I also got my degree, and got started on another one – I’ve began to stream games online, and have started a little bit of a community.

Whatever this is, MS or not. Disability has been helpful in forcing me to be myself. Maybe its the wheelchair: when people don’t look at you, you have to look at yourself. In a way, I’ve been lucky with the timing of studd becoming visible for me – I’ve had access to a vast range of disability politics, and sociological understandings of my experience. Emotionally is a different story, but I’m getting there, and thankfully I have a good GP, who listens to me.

I don’t know what’s happening, but that conceptual understanding has almost taken second place to the lived, experienced understanding. Regardless of the name, I’m still here and I’m assured of the certainity of my lived experience – my legs don’t work, and I’ve become okay with that.

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stumbler
3 weeks ago

@wheelrunconflux , I admire your attitude. Very laudable and sets a good example.

However, it must now be time for the medical “experts” to reach a diagnosis. They must have enough test results and data on you to enable them to make a considered decision. Or perhaps it’s time for a second opinion.

I believe it would help you move forward, although you may be OK with the status quo.


cameron
1 week ago

I agree with @stumbler. It’s not acceptable to leave you like this. Apart from anything else, not being dxd means you have no access to the drugs which have the potential to improve your life. Not all neuros are the best! A friend of mine was left in limbo for eight years because her neuro felt that a diagnosis of MS would mean she couldn’t get insurance……. One consult with a Queen Square neuro had her dxd and headed for treatment. She now bitterly regrets not making a fuss earlier.


supermum1983
1 week ago

are you in the uk?? Why is it taking so long?


vixen
1 week ago

@wheelrunconflux, what an amazing attitude you have. Love that you appear to have ‘grown into’ your change of life path. But yes, you could maybe request to see another neurologist, or maybe go to a new hospital, as it seems like you need a reappraisal. All the best to you 🙂


wheelrunconflux
1 week ago

To all who responded,

It’s taking so long because my imagery is apparently unclear. Also because, they would prefer that it is proven beyond a doubt due to MS being a diagnosis of elimination, as no doubt everyone knows. It could be HSP (hereidtary spastic paraplegia) though even as someone studying history of medicine, I have no idea of what else they could be considering now that even ‘rarely diagnosed’ mimics such as APS (antiphosphilipid syndrome) have been ruled out.

I’m awaiting review of my last MRI (20th April) with Dr. O’Leary of the QEU in Glasgow, but as of yet haven’t recieved the appointment. I agree that a diagnosis should have been made, but I also understand the reluctance with unclear imagery and a 26 year old (me) masters student. I would like clarity, it would help hugely with many situations – however, I don’t think that there is another neuro better qualified in my area and I can’t go private. Even if I could, it seems O’Leary is the one who comes up anyway.

Until a diagnosis is made, I need to just persist. Things are hard, but life is hard – and I am lucky to have the resources that I currently have. Lately, there has been more issue with my legs – more difficulty with general non weight bearing movement. I guess things will become clear when they become clear. I’ve tried contacting MSPs,who agree it unacceptable – but, as long as this eludes diagnosis I don’t see a solution.


dominics
1 week ago

@wheeleunconflux It must be very frustrating to be ‘that’ person who falls outside of the criteria for a definite diagnosis.

At least in Glasgow you are in the heart of MS land – https://multiple-sclerosis-research.org/2019/06/scotland-ms-central/ – so it is likely you are getting treatment from people that are aware.

I just finished an. MSc and received help from the Snowdon Trust. I am not teaching you to suck eggs, def worth a mention.

I agree with your remarks about the disease helping to strip back layers of inauthenticity that we surround ourselves with. There is some great literature about illness and identity. PM me if you want some steer.

A few of us have been thinking and talking about a piece (not really a paper!) about MS and the disruption and (re)construction of identity.

Best,
Dom


wheelrunconflux
1 week ago

@domics It is fairly annoying, but I guess in a way it has made me appreciate the experience more than grappling with a certain concept. This is sometimes something that helps, but othertimes is something that can be really difficult.

Yeah, I’m very lucky to be placed where I am. Not only do I have access to wel thought of treatment/neuros but also a bunch of resources regarding information. Over the last 5 years I have learnt a lot about MS, and from the perspective of someone who just wants to know more about neurologic conditions right now, that ability to access info has been incredibly helpful.

I’m also a conervatoire trained performance artist, if that would be of any use to your piece.

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